Help Kylie Receive the Specialist Care Needed

My name is Kylie Rae. I live in South Auckland NZ and I am 22yrs old. I have been dislocating since I was 11 years old, but it got progressively worse in the last four years. I am fully reliant on hoist and electric wheelchair as I have not walked for over two years due to the instability of my joints and dislocations. I have recently been diagnosed with Ehlers-Danlos Syndrome Hypermobile type (EDS). This is a connective tissue disorder which causes me to have chronic joint pain and dislocations. I dislocate daily and sometimes its multiple joints from my knees, hips, ankles, elbows, wrists, shoulders to my fingers and toes!

I live with Mum, Dad, Nana and my cat! Daily life is hard for me. I have carers morning and night, but It is hard for me to have a normal life because I never know when something will happen to me. It is a struggle for me as I am only twenty-two years old. I want to be out working, flatting, having a family, spending time with friends and doing what I can in my community.

At the end of last year, I met with a Rheumatologist called Fraser Burling. He is the only person in New Zealand who specialises in EDS. He is running his own fully private clinic to help people learn to live with EDS and receive treatments. He is have given me the amazing opportunity to regain my life by starting to receive treatment this year. He is planning on giving me injections into my joints and areas that need it. The injection is Tetradecyl Sulphate. Dr Burling has booked appointments to see me every six weeks starting from the 25 of January 2021.

However, every appointment has a $260 consultation fee and charges for treatment which is $35 per injection given. He has stated he would give me multiple injections per consultation as needed. I financially do not have the means to cover these costs and nor does my parents as they are elderly on the pension. I really want this treatment as it could change my life and give me a change to live it to the fullest. I am praying that there will be some people who could help donate to help me receive my treatment. Even small amounts will be greatly appreciated. I hope from hearing my story you will be able to understand why this is so important for me. I pray God will provide what I need to receive the best outcome.

God bless you and thanks for reading,

Kylie Rae